Is this chronic fatigue syndrome?

a Cpap machine, or, in my case, a Vpap machine. I have both kinds of. apnea: obstructive & general.  Hope this is helpful to you, so sorry you are having fatigue.

Hi,

yes i too seem like some sleep problem as for me not a single sleep, nap without dreaming. this is happening from last 7 years. not a single night without dream. also during the day my mind keeps on thinking on various things. very very hard to stop thinking.

Can anything be done regarding this sleep problem even if found?

Thanks a lot

so may I ask has the Vpap helped you to the point you no longer have ME/CFS or were you ever diagnosed with ME/CFS?  In 10 years I have had every test imaginable including sleep studies.  I was on CPAP without positive results and then I went to another pulmonologist who did another sleep study and he told me I didn't have sleep apnea I have restless legs so he gave me gabapintin I believe and that made me violently ill so that was discontinued.  I take Betapace for A-Fib and it has so many interactions with many medications doctors are reluctant to prescribe anything.  I also have spinal stenosis so was prescribed Lyrica and my lips, hands and feet became so swollen my doc took me off of it.  So I guess my question to you abot24558 is if yur Vpap is helping you are you not chronically fatigued anymore?

I do not move except for breathing when I sleep but I was told I have restless legs after 1 out of several sleep studies.  I go to sleep and wake up 7 or 8 hours later in the same exact position and feel so stiff it takes me quite a while before I can get out of bed.  I also feel exhausted but the bed covers are not moved.  WEIRD!

Hi Frank,

If you are in the uk, I think you need to ask your doctor to have a rheumatologist appointment. It's like an uphill battle to be heard with cfs/me. Because you have the RA result, I think its rheumatology you need.

Best wishes

Beverley

thank you-no I am in the United States.  Thank you and yes I see a rheumatologist also and have treatment for that as well.  I have Multiple Myeloma on top of A-Fib and V-tach-Mul;tiple Myeloma attacks the calcium in bones and these dissolved calciums create an enzyme that attacks the joints as well-it is complicated.  I think that is why it is called Multiple because it affects so many systems but I'm not sure.

Hi Frank,

I wonder if there's some idea that because you have multiple conditions there's been less emphasis on the Cfs/me for you?

Sounds like lots to deal with. I can only imagine the frustration, I know cfs/me, and all the stuff that accompanies it, is frustrating enough! I had a neurology appointment which was similarly unhelpful. Mine didn't know what I meant when I said I had cfs/me. I guess it depends what you're seeing them for at the time.

I noticed in your other post that you live by a lake which sounds idyllic and I hope can be a comfort some times. I find water calming myself.

Beverley

Yes, thank you Beverley01.  This is exactly the problem.  Most of my physicians say my CFS/Me is a side effect of my illnesses.  Well not entirely.  Most do not know or say they cannot treat CFS-the ME none of them understand yet but I am pringitng everythig I can on the subject and trying to interest them.  I learned a doctor wants to treat and most get frustrated with difficult cases.  Because of Betapace they have to study what meds I can take with it.  I think they would be perfectly happy if I took pain meds until I stop everything else.  I have a home in Spring, Texas whgich is now considered Houston and I have a lake property in Onalaska, tx that I am developing for a kind of healing retreat with a couple of cabins and my home-saunas, boats to fish or kayaks to take on the lake on calmer days.  It is a large lake.  I am very much into Spirit Healing, meditation, music and group counseling, idea sharing.  I have friends who suffer from depression, hip replacements and depression, cancer and depression and CFS and fibromyalgia and depression.  I believe that when the body is not whole we naturally are depressed.  When I am playing music my CFS leaves for a short while and then eventually in minutes , hours or a day I begin to suffer anew.  Is this how many of you feel?.  How did your CFS/ME begin?  Did the doctors say ah ha-you have chronic fatigue?  I cannot find a doctor in my state who has even heard of ME/CFS-this got me excited and is how I ended up here because I know many people with heart problems and Multiple Myeloma and Leukemia and aside for intermittent depression they are fine in most every other way. 

Hi Frank,

My cfs/me came from a car crash. Guy went into the back of me. I was In a queue slowing down and he was doing about 60 mph. I was told the exhaustion was from the psychological (ptsd symptoms) and physical (fractured spine) trauma and would go in time. Never did. About 18 months after the crash, I asked If I may have cfs/me as a friend who had post viral fatigue was being referred to the cfs/me service. It tends to be in the UK, all bloods need to come back normal and you need to have symptoms for 6 months. So, I was referred and confirmed I have moderate to severe cfs/me. At present I am having to rest more and do less but I see this as the greater good.

Glad that the music helps you. I Ifind my darkened room with no sound is best when I'm feeling really bad at present. Light and sound become too much.

Best wishes

Beverley

Btw, in the crash I was sent across the road, past oncoming traffic into a road sign where my car became so badly damaged that no one knew how I walked from it. The weird thing was that as I watched the windscreen shatter slowely from the corner, I thought how beautiful it looked. At the time death had not been on my mind but afterwards, when I realized how close I'd been and how serious the Impact, it made me grateful. I had not a scratch on me. The Impact was so hard that the engine pushed my seat upwards and I came around looking at the ceiling. The steering wheel In the centre near the handbrake. So, I feel extremely lucky to be here but with the cfs/me feel only half here lol!

You seem so busy still Frank, with the lake etc and this will impact on the fatigue. I was a very busy woman before all this, single mum of four with my eldest going to university a week before the collision. self employed with new work opportunities and two Interviews coming up. We went camping, I walked 30 miles a week etc etc. Its been hard taking a slower pace. so I can imagine how hard it is for you too but, try to cut back on anything someone else could do? Get someone else to help.

Beverley

thank you Beverley, I can relae with your sudden experience with a car accident.  Violence is cviolence and something so horrific stays with us.  In my military experience I had a hard time shaking the thought of how frail we are and how at any moment it can turn so down right awful.  We go through life going tra la la and then hit a brick wall.  I just don't know why the US doctors don't know what the ME part of the CFS means.  If they know they aren't saying-at least none of my doctors are.  They sure don't know how to treat it.

Yes Beverley-after years of counseling and all I still remember everything as if it were yesterday.  I keep journals and you ever hear a doctor say memories change?  Well I can recall and speak of the event and it matches what I wrote almost 45 years ago.  Meditation and my music is all that stands between me and insanity I think.

As for my being busy you see thats what doctors tell me I need to be.  I spent years in bed more than not.  I am building this lake front retreat for meditation and relaxation for myself and others but I do not do the physical work myself.  I have to have blood transfusions every week and I see cancer patients as young as 3 and as old as 80 and many do not have the means to take a vacation.  I do not want to sound like I am boasting or I am trying to sound like a saint but I have the means to give a few people a gift of a weekend or a few days on a lake to do what they want-fish-kayak or swim or just laze in a hammock.  No charge.  I am not married and aside from caring for my daughter and grandchildren I have no one, really.  At my age life long friends are starting to get ill and some have passed.  In my business many people are poor because their work is sporadic. I know when I do physical work I am laid up for days on end.  If I am stressed like I have an ex sister in law who wants me to stop my hobbys and she nags me about little things and it exhausts me.  She would like me to keep my money in the bank, I think, lol.  I don't know what I am trying to say.  I think maybe that I want to help others and help myself by helping others.  I am vexed. Why is ME/CFS in my country so hidden?  Why do my doctors all say CFS is a mental condition that still isn't proven to be real?  And the ones who admit it is legitimate don't have a clue or don't seem to want to know how to treat it.   Who in my area knows doctors who treat the whole body and mind for CFS.  I believe I posted that the doctor I saw on monday never even heard of ME/CFS-he has heard of CFS.  Finally I want to say that I sit with people who have various forms and types of cancer and many do not have CFS or ME/CFS-my aunts daughter had colon cancer and had surgery and tons of chemo and she is now cancer free and is as happy as a clam.  I wrote to several sites asking if there are any studies in my area being done and as of yet have not heard back from anyone.  thank you and I hope everything works out for you

Hi Frank,

Cfs/me can appear in any us, from what i understand, there Is usually a trigger. Some kind of trauma; mental, physical, emotional etc. People on here have reported getting it post virally, after surgery, after giving birth amongst other things. People get it from all walks of life-it really doesn't have rhyme or reason. Though an active lifestyle seems a precursors?

My work was in psychological therapies and as such, I knew it wasn't ok to feel terrified in the hospital car park 2 days after the collision. I had emdr and felt It helped. I wasn't aware I had cfs/me at that point. I feel that the images I had were calm, I could see in the rear view mirror he was going to hit me and couldn't do a thing about It. I Looked to the sky and thought "you're kidding me" and I laughed. I never thought I'd end up with ptsd. It hadn't been traumatic I thought. Maybe that was wishful thinking. Of course it was. I was literally seconds away from being hit by an oncoming car and hitting the post....I was so, so lucky. I felt all kinds of emotions one of which, ridiculously was-I shouldn't have survived. I found It hard to get my head around and I Couldn't tell anyone. If my daughter had been sat where she usually was, we'd possibly both been dead or at least amputees. Awful thoughts like that. The thoughts of the crash are still there but, Luckily not as Intense. Like I've been able to let a bit go. I miss my car. It was like a mini van. Unusual. Six seats.

What you are doing Is truly beautiful Frank but, cut yourself some slack on the physical. Get some help In. I had to get a cleaner, darn nearly killed me to do it! Totally independent beforehand, wood panelled my own bathroom, hung doors etc. You are being there for others, which Is a wonderful thing but, Cfs/me needs balance. You need to really think about you too. Rest is still important. I know that's not what you want to do after a period of being bed bound before.

Best wishes

Beverley

Hi Frank,

No Idea why my other message is being moderated. No links or anything.

Hope today Is a peaceful one.

Best wishes

Beverley

I have no idea.  What was it about?  I'm finding the navigation of this forum difficult.  I have no idea what the vote is for or the badge or any of that.  I can't seem to get any kind of answers.  I mentioned my illnesses and thoughts and am told I was dark and someone said my post was too long and close together and some people don't like that..

Hi Frank,

Who said your posts were dark, was it a moderator or a forum user? Maybe mine was classed as too dark perhaps too. Its hard to gauge what will offend someone.

Re the site: if you look on this message you will see an envelope at the side. If you click on it you can send private messages. Badges are, I guess, a bit of a moral booster? Again, if you click on your name at the top and scroll down to badges, it also tells you what they all mean. It works on a points system. I think the vote thing is to say you like what someone has written but dont want to reply. Trouble is, i use quite a small phone at present to reply and constantly accidentally vote on things when scrolling down! Hope that helps. It takes a bit of time to get used to things.

Hopefully the moderator will allow my message through.its hard enough typing it all in the first place! : D

Good day to you

Beverley

Hi Frank,

Well, at least its allowed my longer message through now. Hope its useful to you.

Beverley

Interesting you relate to a car crash. My wife and I have been trying to find a reason why this illness has kicked off again after 20yrs. Last September I had a fall in the bathroom, the mat slipped. I hit my nose directly onto the basin. It was important to get to the toilet  with a bad stomach. After some time I got back into bed, once agan I had to get to the toilet, slipped again, put my hand on the door to steady myself. Door was open so I hit the landing wall. I remember saying to myself, not again. It is almost like a farce except this was not funny. So did the bang kick this thing off again was it the stomach bug or the virus I picked up this last Christmas. What ever the reason like us all the sooner it goes the better.

Hi retriever,

Sorry to hear of your fall and the recurring symptoms. I guess it could be the virus and fall combined even. I fall and bump into things alot with cfs/me and it can be so hard to feel great when it happens. I managed to walk into a lamppost and sprain two ribs last year! It was embarrassing.

Hope that these present symptoms are short lived for you.

Best wishes

Beverley

Hi Beverley, I touch the dog for an hours walk yesterday. Today it has told me I did the wrong thing, but how do you know if you don't try. The only time I feel like falling is when I get up in the morning so I sit on the bed until my head is clear. You must have really hit the lamp post to do that sort of damage. What daft thing am I going to try next to get out of this cage.

You can probably guess the breed of my dog

Hi Retriever,

Its so hard to get the balance right and yes often it is a case of trial and error to see what affects us. I know I'd find dog walking impossible right now! We have guinea pigs : ) a bit easier to manage.

Today I have to brave the post office as I have to post something urgently, its taken me 3 weeks to fill it all out and the deadline is Friday, so has to be today. At least it is sunny and I can rest when I get back.

Is you're dog a poodle? : p

Hope your day goes well

Beverley